Tuesday, August 27, 2013

First of all, I have to say as a parent of an 18 yr. old on the spectrum, there is no cure for autism or aspergers. It is a difference in the wiring in the brain. You can't change that.

I just lost half the people who wandered to this blog....

Okay. You can't cure it. That doesn't mean that you can't find ways to deal with some of the challenges that aspergers presents (and autism for that matter). But to do that you have to abandon the word CAN'T.

Can't kills. It kills dreams and hopes. It kills opportunities and chances. So erase it from your vocabulary right now because I can promise you this: you are going to hear that word a lot and you CAN'T buy into it. Your kid doesn't know he can't speak. He doesn't know he can't ride a bike. He doesn't know he can't make friends. Its a bullshit word.

That being said, what can you do? First, you have to toss out "normal" expectations. Those baby books where you record everything? Useless. Make your own with goals that your kid achieves.

My son wanted to learn to ride a bike from the age of four. We tried everything. From the age of seven until he turned thirteen! I tried to teach him. My husband tried to teach him. The neighbor tried to teach him. A family friend tried to teach him. Three separate occupational therapists tried to teach him. When he was thirteen, we began a new round of physical therapy to help him with some motor skills issues. The therapist, a man named Alan, asked my son what he wanted to learn. Ride a bike, J replied. I explained we'd been trying every technique available for years with no luck. When he looked at his feet, he could go forward briefly, but would fall over. If he looked up, he could only go in a tight circle to the left briefly before falling.

Alan said to leave it up to him. First step? Spinning fast while lying on his side. This was to improve his balance. They worked on this for several visits. Next, he brought out a bike with HUGE wheels and no pedals. He took him outside and had him just sit on the bike and steer while Alan ran holding the bike upright. When he was able to steer, they added in the brakes. Stop. Go. Stop. Go. Finally, Alan put the pedals back on, but only to get the feel of the pedals under his feet.

Twice a week for an hour each time, Alan ran around the building with my kid on that bike, as he added in the steps to success. And then they reached the pedalling stage. I stood and watched as they disappeared around the building. And then waited for them to come back around. And when they did J was riding the bike! Six years. 7 adults. Countless techniques...

Alan managed to do it in 2 months.

We never assumed "can't". We just had to find the person who knew the way. It's what you have to do with everything. Our kids can learn, they just need us to find the way.

So, if you're here reading this and your kid is struggling with something (or you are a person on the spectrum struggling with something), what is it? How can I help? I have 18 years of experience finding new ways to do things.

Monday, August 19, 2013

I've vented a lot on this blog. Today, I want to try to offer some advice for parents of kids who are newly diagnosed. My son was diagnosed just short of his 7th birthday. We knew something was wrong & had even had him tested at 4 yrs. old, but no one could pinpoint what was going on with him. Once he started kindergarten, his differences became painfully clear.

It was a scary time for us. Here's this child who we love, who we've imagined a future for...and wham. Suddenly that future is something very different. A future that was very uncertain.

First, I want to say, pick up your child and hold them. Love them. They are the same child you held in your arms yesterday. Nothing about that has changed except now you have a word to explain why they are struggling. This word gives you options. It gives you opportunities. I know that it feels like a death. You're questioning if they will ever graduate from school, have a family, have a job, be a contributing member of society. So take the time to grieve the future of the child you thought you had, but don't take too long. You have a lot to do.

You are about to embark on an odyssey.

I want to warn you that not everyone is accepting of a child who is different. You need to grow a hard shell. You need to be prepared to let go of people who you expected to be a part of your lives forever. You cannot predict who will be there for you, but I can promise it may not be the people you expect. Other people will do everything they can to help you. Some of them will be complete strangers who will become integral to your lives. Embrace them. Take what they have to offer. You will need the support.

You need to find a pediatrician who understands autism. My pediatrician ignored all the warning signs and told me for years that I was being an over-reactive first time mother. When presented with letters from the kindergarten teacher, the guidance counselor, and my list of things I'd been telling him for years, he finally listened. I knew my son had autism before he did.

You may also need someone trained in ABA in the beginning. Kids on the spectrum don't learn like their typical peers. They can't sequence, so simple tasks like brushing their teeth are confusing. My son used to get angry with me when I told him to put his shoes and socks on. It would lead to incredible meltdowns. Then one day he told me that you can't put your shoes on before your socks. By asking him to do that, I caused him to shut down.

For your own sake, break down tasks. You'll be amazed how many steps there are in getting dressed, brushing teeth, taking a bath...anything you do, really. Teach things in steps. Maybe they can learn to put toothpaste on their toothbrush first. That's a number of steps in and of itself. A person trained in ABA will be like gold to help you with this.

The next thing you need is an occupational therapist to deal with any fine and gross motor skill deficits. Kids on the spectrum often have uneven development. They have issues with proprioreception and motor planning. An occupational therapist will not only work with them, they are down to earth and priceless fountains of information.

You're also going to want an occupational therapist skilled in working with sensory integration dysfunction. My son had issues with sound, motion and touch. Our OT worked endlessly with him to help him develop coping skills and to improve his sensory function. I can recommend a swimming pool and/or a trampoline. Both are amazing at helping with sensory integration. And while we never used it, people swear by horse-riding therapy.

You're going to want someone (a psychologist) skilled in cognitive behavioral therapy. This helps work on understanding theory of mind, executive brain fuction, and general thinking skills. My son's psychologist was the most important person in his life from the age of 10 until 17. He gave him the social skills to cope with a world that isn't always user friendly.

I'm going to throw this out there. The doctor who diagnosed my son said to us to remember that it may take him 2 times to learn something, it may take him 20 times to learn something, but assume that its going to take him 200 times to learn something and then we won't be frustrated. This is maybe the best piece of advice I received in the beginning.

The next thing I want to tell you is you have to HAVE TO make time for yourself. You're going to be tired, depressed, frustrated, discouraged, and worse. Whatever you have to do to get it, there needs to be a portion of your day that's "Me Time". During that time, you have to do something you love - read, blog, craft, dance, exercise...whatever it is, it has to make you happy. You have to do it. It will keep you sane on days when sanity is iffy.

Find yourself a community of other parents with children on the spectrum. There are organizations out there (more than when my son was young). Contact them. I spent a lot of time trading information with other moms on delphi forums because when my son was diagnosed, there wasn't a lot of information out there. No question is stupid. Plus, they get it. All of our kids are different, but in some ways they are all the same. And no one will understand the challenges you face better than other parents facing the same challenges.

Don't sell your kid short. Everyone kept telling me what my son would not be able to do. They were all wrong. Why? Because I didn't accept that. I follow a woman on twitter whose daughter is a little older than my son. She's non-verbal and just got a therapy dog, and she's freaking amazing.

There will be many challenges to come, but there is hope. If you don't give up on them, you will find that your child will be teaching you about perseverence, strength, courage and the power of love.

Stay strong. Stay positive. Take care of yourself. Build a team to help you. Read everything and anything you can get your hands on. Educate yourself. Question things. And feel free to ask me anything. I'm here.